All about living a full, active life with HAE

If you or a family member has HAE, you may be concerned how it will affect your life. Many people find they can successfully manage the condition by working with their doctors and live healthy, active lives.

Having HAE means you need to take a few precautions, such as identifying personal triggers and symptoms, always having an on-demand treatment nearby, and working to reduce physical and emotional stress. The more you learn about HAE, the more in control you'll feel.

HAE affects everyone differently

No two people are the same. The severity of HAE attacks, how often/where they occur, and the timing of attacks vary widely among individuals. The frequency of attacks can even change as a person ages. Additionally, how people respond to treatment can vary as well, based on factors such as their weight.

Children

Be alert to the changes in your child’s mood or behavior that may herald the onset of an attack.

In families affected by HAE, all children should have their C1-INH levels tested after age 1. Even if a child has no symptoms, an early diagnosis may help you prepare for future attacks.

Physicians report that their youngest HAE patients tend to be preschoolers rather than infants or toddlers. However, many people do not experience attacks until their teen years or later.

Children usually have difficulty conveying discomfort, so help them “name” what they’re feeling and try to see if anything triggered their attacks.

Inform the healthcare professionals at your child’s day care, school, summer camp, and after-school programs and make sure each has a letter from your child’s physician on file. It’s also a good idea to create an HAE Identification Card that includes key family and medical contact numbers, along with directions for what staff should do in case of an HAE emergency.

CHECKLIST

for parents of children with HAE

Test child’s blood levels after age 1

Help them "name" symptoms

Identify triggers with them

Give them a card with emergency contacts

Keep a doctor letter on file at school

Teenagers

It’s a time of changing hormones…and changing responsibilities.

Hormonal and emotional changes increase during the teen years, and many people report their first HAE attack during puberty.

As teens develop more independence, the responsibility for their health should gradually shift from you to them. This will help them transition to the college scene or the working world.

Teens should also carry an HAE Identification Card in their wallet/purse (or wear a medical ID bracelet) in case of an emergency. Their inner circle of friends should have an understanding of HAE to help if you’re not available.

Adults

Hectic lives may lead to more frequent attacks.

With all of the challenges that come with adulthood, people who live hectic lives may be at increased risk for attacks triggered by emotional or physical stress. Try to limit these factors as best as you can. And if you have upcoming surgery or dental work, tell the doctor who treats your HAE beforehand, as these procedures can trigger HAE attacks.

Women

Changes in hormone levels have been associated with increased HAE attacks in women. Many young women report changes in HAE attack frequency and severity when using contraceptives that contain estrogen. Doctors typically recommend that women with HAE use only contraceptives that do not include estrogen.

Pregnancy

Natural hormonal changes may increase or decrease HAE attacks. For many women, the frequency of attacks worsens during pregnancy, while for others symptoms improve.

Menopause

Menopause is a time of physiologic change in which hormone levels are altered. If you are considering estrogen replacement therapy during this change of life, discuss your treatment options with your HAE specialist.

Know your triggers

Many people with HAE successfully manage their condition and enjoy full, active lives. Recognizing your triggers can help you stay prepared.